Feeling frustrated, and ticklish

After yesterday's post about feeling grateful, today I am feeling less so. I saw my neurologist today for my regular checkup but I went in armed with lots of questions. After the last few months of bouncing around on the dex, to say that I am feeling frustrated is an understatement.

The great thing about my neurologist is that he understands this. And I'm sure he wants me to feel as good as I can, but I guess there is only so much we can do.

Obviously, nausea (and fatigue) are still my main problems. He remarked that it is no wonder I am nauseous as "your tumour is tickling your cerebellum and it doesn't like that". I actually laughed out loud at that, and yes now, all I can see is "Tickle-me-Elmo" inside my head, laughing away.  We discussed whether there were any other medications I can take. He listed a few but doesn't want to put me on them due to side effects. Plus they are really just managing the symptoms. James had found a recent research article that discussed another drug - Emend - and it's effects on brain tumours (in that they help them shrink). However my neuro hadn't heard of it and a quick look at MIMS shows why - at $130 for 10 tablets it puts it out of the reach of most people. Plus it is usually only used in a chemotherapy cocktail. Nevertheless, he said that he would talk to my oncologist about it and whether there was any trials or samples or something.

There is also a progesterone blocking drug we could try, but he seemed a bit reluctant to try that as we don't know what type of receptors are on the tumour (oestrogen or progesterone). He did agree that I should talk further with a gynaecologist about it though. He was happy to refer me to my old OB (and in a strange coincidence, he mentioned that she lectured him at uni, and was really tough. Tee hee I can imagine my OB being like that).

We discussed driving - he thinks I am fine to drive although not long distances. And working - he thinks that perhaps I shouldn't try until the new year. Which is a bummer, and a relief. Especially since I can't find one at the moment, although a job ad has just popped up that would be perfect so I may well still apply for that one and see what happens. If I don't get that, I will just stop worrying about it, but it does mean I may have to talk to centrelink about what I might be entitled to.

Otherwise I am to stay on the dex until January at a dose of 1mg. I had a bit of a nystagmus today which is a bit of a worry and obviously why he wants me to take it all a bit slower. He said it may take up to 6 months to get off it, and then my brain could take 6 months to adapt. He also didn't have all my test results from the hypertension specialist.

So definitely feeling very frustrated. And perhaps a little more like this......than a happy ticklish version.

Feeling grateful

Today I am feeling grateful for many things.

I am grateful that James can work from home and is flexible enough that when I am struck down by a gastro he can take the day off to look after the kids. And I am grateful that he does this without even thinking.

I am grateful for two beautiful, compassionate children. Who, when they realised I was sick, wanted to first take me to the doctor then make me a get well card.

I am grateful for sunshine that will dry my mountain of washing, and also heat the pool so we can have a swim later today.

I am grateful for scientists, and pharmaceutical companies who make drugs that make me feel better. Particularly zofran. I am very grateful for zofran.

I am grateful for friends near and far who offer me kind words of sympathy, hugs (virtual or otherwise) and something to laugh at.

I am grateful for so many things this day. Is there anything you are grateful for?

A matter of geography

As I mentioned in the last post, one of the big things we have done in the past few months is enrol Charlotte in school (prep) for next year. I found this quite an emotional thing. When we started trying for a baby, we only really counted on the baby part. I never expected to have a schooler! (as Charlotte calls them).

One thing I also never expected, was the depth of emotion I feel about the issue of schooling. Now I respect every one's right to a different opinion on this matter. We all have our own reasons for choosing a particular school. However, one thing I strongly believe, is that you don't need to pay for a good education. Especially at the primary school level. I've heard lots of arguments (Oh the school near us is a bit dodgy, private schools have better teachers, you get more opportunities at private schools).  I feel it is a bit rude to teachers everywhere to have these assertions made - all teachers go through similar university courses. They all go to work as dedicated and enthusiastic as the next one. And I know many a person who went through a private school who didn't get the opportunities they wanted (either they couldn't access a subject, or needed extra tutoring etc) or even a quality teacher.

We feel that should the children need extra tutoring, or "opportunities" then we can use the money that we may have spent on private school to fund this. The cost of one year at a private high school would pay for all of us to go on an art field trip to the Louvre, or perhaps a history tour of Rome. I'm sure we could find lots of necessary field trips.

Nevertheless, we still had to make a decision about which local school to send Charlotte too. We are very lucky, in that we have several quite close to us. Actually, we have two that are almost exactly the same distance apart. This year, one of them has enacted a catchment plan (where they draw a line and say children in that area can attend, all others have to go on a waiting list). Technically, we fall into that school's catchment. Given that school is in high demand, it would make one think it was superior. However I have looked and looked, and I can't see much difference. Yes it is bigger (which is a negative in my opinion); but both schools have identical naplan scores. They offer similar programs (music, a swimming pool, languages). Both have very active P&C's (so watch out, there will be an abundance of chocolate drives), and both have benefited from the government's school's building program. The difference for us, is that one we can access by back streets - the other we have to cross a major road. So for us, it is a matter of geography. We are going to send Charlotte to the slightly smaller, slightly less well regarded, but so much more convenient school. I have no issues with this. I feel we have made the right choice for us, and most importantly, for Charlotte. She has already attended an open day and a "teddy bears picnic" there and is so excited herself. We bought her school uniform last week and I got a bit teary seeing her all dressed up ready for school. Now bring on next year when I have to face her first day as a schooler!

Slack

Well I have been slack. It has been months since I last posted. But I have been a bit busy. In these last few months we had a seemingly never-ending run of house guests. I saw all of my family (even if only briefly). We renovated our kitchen, laundry, outdoor retaining wall and finished off a few other bits and pieces (new garage door, new windows, installed solar panels, replaced a hot water system). We had some time away with my parents at the beach, then travelled onto Sydney for my baby brother's wedding which was wonderful and hectic and tiring. I seem to be on an endless quest for a job. We've enrolled Charlotte in school (eek) for next year, and James had another trip to the states.  So I guess I haven't been that slack.

Through all of this blobby has been behaving himself - sort of. I felt like I hadn't improved yet looking back, the dizziness is slightly less. However, blobby is not playing nice with the dexamethasone. My immune system has taken a battering and I am perpetually sick. I have had tonsillitis 4 times in the past few months and a never ending battle with coldsores. So when we got back from the wedding, I decided to go off the dex. I had gotten down to 0.5mg and was feeling quite good. The first few days were ok; I felt "lighter", my mood had improved, and the symptoms were under control. Then I got more fatigued. So fatigued. My bones hurt they were that tired. The nausea got worse. I started retching several times a day. Of course I was in denial that anything was wrong. Until a good friend made me realise that perhaps I wasn't ok. Last week, after vomiting half the day, I contacted my neuro who recommended I go up to the hospital. By that time, I had gotten my BP up to 160/100 and my heart rate up to 140 so I was put straight through. It turns out I was dehydrated too so put on a drip, given some zofran (sweet sweet zofran) and rushed through for an emergency CT scan in case there was more swelling. Thankfully blobby looks just the same. I was let home later that day - back on the dex (and at a higher dose of 1mg).

It's been tough since then. The dex mucked me around and I got sick again with tonsillitis (and a needle in my bum - ouch) and I have only been coping with a high dose of zofran. But today I feel a bit better. I am so so frustrated at this setback. Right now I am too tired to worry about too much else but I have had enough, and James and I have spent a bit of time researching other medications and options and looking at clinical trials.

On top of this, I have commenced tests to investigate my ever increasing blood pressure. I've done two 24 hour monitoring cuffs (the first one didn't record - grumble) which are looking ok but this weekend I have to do a sleep study. I still have to do an echocardiogram, ecg, bloods and 24 hour urines but I think it will all come back with nothing more than "white coat hypertension" but we'll see.

I promise to do more posts about some of the big things going on. I have written countless posts in my head but they never seem to make it to paper. But I will try to be less slack; once I find the time.

Resilience

It is in choosing to rise that we shine - Ingrid Poulson

Recently I read "Rise" by Ingrid Poulson. In this book, she shares the shocking story of what happened to her family after domestic violence, and how she overcame this heartache to rise, to go on. After the initial harrowing chapter of what happened, the book outlines the concept of resilience, how one can (and should) develop it.

As I was reading through the book, I realised that I didn't need to use the strategies in the book. I am already doing them. I have found resilience in my life.

This didn't really come as a big surprise to me. Many people have commented to me on how "strong" I seem. I'm not sure about that, but I do know that no matter how bad the day is, tomorrow is a new day. Hopefully filled with sunshine and unicorns that poop rainbows, but I won't know that till it comes. I'm not saying that every day is all happy smiles. Of course I have bad days when I get a bit down. I try to allow myself those bad days (sometimes only hours) because I know that something will happen to make things just a tiny bit better. One of the kids will make me laugh, or I realise the nausea has eased, or a friend puts a smile on my face.

As Ingrid outlines in her book, resilience isn't about "being strong" every day. It is about acknowledging those bad days, living through that moment, then moving on. 

I also don't have the sense that "it isn't fair". I won't say that I've always been like this. While we were going through IVF for Charlotte I had that awful feeling that I deserved all this pain and heartache. That I was a bad person and had done something wrong in life. Once we were trying again for Angus that sense had gone away, although I was still feeling that "it isn't fair" while pregnant (and sick) with Angus.

But then blobby came along. And you know what, it isn't fair. It isn't fair that I am diagnosed with a brain tumour while my precious children are still babies. It isn't fair that we have to spend so much money on cancer treatment. It isn't fair that I am too unwell to even take care of them. But life, in general, isn't fair. Once you start to accept that, it makes it easier to just get on with it. If I spend every day worrying about why this happened, what did I do to deserve it, then I take away energy to spend with my family. 

Because I haven't done anything wrong. I'm inherently a good person. Of course we all do some not nice things and have a few faults (really, who hasn't), but none of those mean that you will be struck down by illness or tragedy. I've also done some great things in life, and those don't get rewarded with things like winning the lottery either (sad to say).

Blobby has allowed me to recognise that I have great internal strength. I have developed coping strategies and skills that have allowed me to continue on every day, not matter what is being thrown at us. Sometimes this means we ask for help, sometimes it means I have a nap, or go for a walk, or watch some trashy telly. I like to make lists about things that need to be done (either mentally or on paper) and when I get a bit too procrastinatory, simply saying aloud what I need to do is enough to kickstart me into gear.  We all have our own way of coping though and there isn't any right or wrong way.

I see one of the greatest gifts that blobby has given us is this resolution and fortitude to just keep taking it one day at a time. But also that this is something we can pass on to our children. I hope that they will grow up to be resilient adults, able to handle anything this world may ask of them.

The above quote from the book affected me profoundly - "In choosing to rise, we shine". I make my own choices about how I handle blobby. I choose to go to the gym for my recovery, I choose to try and eat well, I choose to take my medications and do what is asked of me by my doctors. I also choose to not sit in a corner and lament the hand we've been dealt. I choose to rise.

(Rise, Ingrid Poulson (1998); Pan MacMillan books is a wonderful read for anyone who needs help finding their internal strength. I highly recommend it)

Something to be proud of

Doing physical exercise has been a part of my recovery process ever since I was diagnosed. I know how important it has been; to maintain my stamina, to maintain my bone density, and to try and keep on top of the weight gain (which I still haven't really managed). My ability to do exercises at the gym has obviously correlated with how I was feeling at the time. Many a day I could only do a low impact workout as all I wanted to do was vomit, while other days I could really push it.

You may recall that back in January I had a strange urge to try running. This only lasted a few days as I then had a bit of a setback. Since increasing my dex dosage again at the start of the month, I have had an improvement in my fatigue and nausea. I was getting a bit bored with my exercise program, so I thought I would try aquarobics. I was a teensy bit apprehensive about this. Not only was I the youngest in the class by several decades, but I also wasn't sure whether I could handle an entire hour in a class. But I really enjoyed it, and after the first week or two I wasn't as fatigued. I found that I could do things in the water like running, and bobbing up and down that I simply can't do on land as I get too dizzy.

But after a few weeks of aqua, I got the urge to try running again. I have seen several friends doing fitness tests for a certain weight loss program, and just wanted to see if I could do it too. I wanted to see how long it would take me to do 1 km (if I could even do that) on the treadmill. I was so proud of myself. Not only did I do the km, but I did it in 8 mins, 22 secs! I've done it a few times since and have brought that time down to 7 min 51secs. I can't believe that I am actually running (I've never been a runner; I look all ungainly and quite silly. Plus I really need a very good sportsbra as I am likely to give myself a black eye). I'm not sure how far I want to take it - but perhaps I should try working up to 5km.

Yesterday I also re-did my weights program. I had lost some motivation for doing weights, and I really do need to keep doing that to keep my bones nice and strong (especially since I had a fall in the kitchen this week, stupid socks on slippery floors but ouch!). The trainer gave me a whole stack of new exercises to do (one is called "the Torsinator" which just makes me giggle). At the end of our session, she commented that "I was really very strong". I don't think she realises how much that meant to me. To think that a year ago I was so weak and ill I could hardly even walk to the shops. That when I got home from hospital I couldn't lift up my son, or walk up the stairs. I could hardly even push myself out of a chair. I'm now leg pressing 100kg, chest pressing 20kg, and running!! I feel just a little bit proud of my achievements. Now to work on shifting this weight.

Hectic

The last few weeks have been incredibly hectic. I found my stress levels have been up and down but thankfully we seem to be settling down again and I'm feeling back in control.

The big thing obviously was all of my follow up appointments. I had my MRI two weeks ago. I'm used to the procedure now, but that doesn't stop the anxiety from building. The following day I was so jumpy. Every time the phone rang I was on edge thinking it was my specialist with bad news. I saw my oncologist the next day and the news was good. No tumour growth! The oedema has settled. No tumour shrinkage either however as my oncologist said, it is early days.

I also saw my neurologist that week who confirmed all of that. I discussed with both the dex doses I've been on and how much better I feel on a higher dose. Both agreed that I should go up a dose, however they disagreed on the cause of my symptoms. My oncologist thinks that the dex is keeping the symptoms under control, my neuro thinks the dex is causing the symptoms. Either way, I have since gone back up to 0.75mg and I feel good again. Still a bit tired, but the nausea has decreased. Both seem to think it will be months before I can get on top of all of that. Both specialists also confirmed the nerve damage to my trigeminal nerve (face) is still present but that is more annoying than anything. I now don't need to see my oncologist for a whole year, and my neuro in 3 months just to check on the dex. I can't believe that I am moving out of the treatment and active management phase into the monitoring phase! It feels very strange.

Of course other big things have been happening. We have been getting quotes for the house renovation which has taken up a lot of time; and surprisingly a lot of emotional energy. It is a big decision though with a lot of money to be spent, so I do want to do it right. We also finally got the solar panels installed on our house, fixed up the garage door, demolished an 8 metre high tree, and did some painting around the house. I've been going to aquarobics, started seeing a dietitian, and applied for yet another job.

The kids have been....livewires. It is like a switch got flicked on Angus and he has turned pure evil. We are having a lot of time outs with him. His favourite activity at the moment is playing in the dirt, throwing the dirt, putting the dirt in the cat flap. Or throwing rocks at his sister, hitting his sister, pushing his sister. Sigh. Charlotte unfortunately was sick this week with a nasty bout of tonsillitis but we have noticed a developmental change with her as well where her language, and emotions have taken another leap forward.

And not least of all of that, yesterday was my birthday. I had a fairly quiet day, but it was still in stark contrast to a year ago where I had my birthday in hospital. I am still thinking about this time last year and how sick I was. The busyness of the last few weeks, and how much has happened in the same time that I was stuck in bed, is staggering to me. I am looking forward to things calming down over the next few weeks, that is until we really get going with the renovations. But then it will be a different sort of stress; one which I am really looking forward to as the end product should be fabulous!

Anniversaries

We have anniversaries for so many things. The occasion of meeting someone, weddings, births, that trip you took. Some of them pass without much fanfare while others stick in your mind.

I was thinking about dates and didn't even realise that this week 5 years ago was when we conceived Charlotte. Well technically she was conceived months earlier and then put in the freezer, but this was the week that she was frozen, then transferred.

Co-incidentally, this week a year ago was when I went downhill, and was admitted to hospital. This is the anniversary of when things became really hard. It started over the course of a few days, although looking back now, I had been getting sicker for a few weeks before hand. Reading back over old blog posts, I wrote on the 3rd April how hard things were and how fatigued I was. Things got worse after that with increasing nausea and fatigue. In hindsight, we were very silly. If anyone else said "I have these worsening symptoms and a brain tumour" they would have hightailed it to hospital. Instead, I kept telling myself it would get better.

It started on a Saturday when I woke up and I had vertigo. I also had the nystagmus then but I didn't realise what it was. Stupidly, I still kept trying to do normal things. I remember that we went to the shops and had lunch. But the kids played up, and I was just about in tears by the time we got home. The next day was slightly better so I think I thought it would all go away. By the Monday I knew I wasn't coping. I spent most of the day in bed. James and I had a vicious argument when I just lost the plot as I felt so sick. We had a visitor for a short visit who I don't think had any idea how serious it all was, although one look at a worried, stressed James should have given them an idea. That night I went to an acupuncturist; I was desperate. It didn't make any difference to the dizziness, nausea and vertigo but might have been relaxing. I drove there which given I was seeing double was really very stupid, but that was the last time I drove for nearly 3 months. Tuesday was a blur of vomiting and lying down - I was just trying to get through the day until Wednesday when I had an appointment to see my specialist.

It was such a relief to go and see him, even if I did vomit the whole way there. The kids had swimming lessons that morning and I did think that we could still make it after seeing him; again we were in such denial. Even when he said he would admit me I still thought that I would go home after a day or two. How wrong was I.

Three weeks later I was home; fatigued, weak, still dizzy, and medicated to the eyeballs. Every day since then has been a battle to manage my tiredness, nausea, the kids, the meds, appointments, my recovery. I've had quite a few setbacks along the way. Blobby has taken a lot of things from me. I am so paranoid now about my health and the kids as well. I am scared to plan things because I don't know how I feel. I want to go back to work, but on a bad day that thought scares me.

But being sick has shown us how many special people we have in our lives, and for that we are grateful, and we appreciate every one who has helped us along the way.

I have my follow up MRI, bone scan, oncologist and neurologist appointments next week which is making me feel anxious. It doesn't help that I've been having a few bad days with worsening fatigue. I did have some tests done the other day which are mostly normal but made me feel anxious, although my GP has referred me to yet another specialist for follow up. I hope the MRI shows no growth again, and if that is the case I hope I can start to move forward with confidence. Blobby has beaten me up, but I'm still here so he hasn't won yet.

All kinds of awesome

 I am struggling a little at the moment with motherhood. I am tired. And being tired, and being a parent, are really incompatible. Well, being an energetic, engaged, understanding, creative Mum that is. I get very disappointed that I'm not the sort of Mum I want to be. But then who is? What if the mums I see out and about, with clean, happy, children are just faking? What if the pictures I see on other blogs and facebook groups are only the things that others want me to see? Of course we are all going to paint a happy face, but what if that is at the cost of thinking "I am alone; I am not doing this right" when really, we are all doing the same thing? Just trying to get through the day without resorting to alcohol and rocking in the corner.

So today I had an AWESOME day. Filled with all kinds of, well, awesome.

I started the day with a sleep in. Angus didn't wake until 6.38 am. Awesome! (he usually wakes at 6.18am. Give or take).

Once the kids were up and breakfasted, Charlotte decided that she wanted to do some painting. With my awesome parenting skills, I ensured that the mat was on the floor, and smocks were on. We had a great time painting bits of cardboard (Charlotte told me that they were for a dog house, who am I to argue). She then proceeded to mix up most of the paint. But I saw that it was a cool swirly pattern, so I quickly dipped some paper in and made some truly awesome pictures that we can then use to decorate cards with. The kids were happy. How awesome was I!

Swirly painted paper that looks really awesome

I cleaned up hands and faces, and hair, and was feeling pretty happy with myself. Probably should have checked their feet too before they walked all over the house.

Can you see the paint, that was oozing between the toes?

I then went and put the washing on, because I am such an awesome Mum and am completely on top of the cleaning. The kids were playing happily upstairs. So it was nice to walk into my room to see this: a dinosaur, barbie massacre.

Then I decided to make some fresh bread rolls for lunch. How awesome is that! The kids "helped". They truly did turn out awesome.

Fresh, homemade wholemeal rolls. Yummo

 
I may have made a bit of a mess. It may still be there, waiting for someone else to clean it up.

We went off to the shops to get things for dinner. I made a point to wash Angus' face before we went. I probably should have washed the paint of my legs too, but I was trying to show how awesome I was to everyone.  Perhaps I should have brushed my hair too.

Isn't she just delightful

To top off our day, we went for a play at the local park. After a few minutes, Charlotte decides that she needs to go to the toilet. Right there. Awesome. On the plus side, I did shower them both when we came home, so both children are clean and showered before dinner. Awesome. And I can feel happy that the floor is clean, in parts (mainly the part where Charlotte had yet another wee accident, Angus spilt his milo, and where the paint was. But if they keep this up the whole thing will be clean eventually). The washing is still drying so I don't have to feel guilty about not putting it away (it was a rainy day today).

Angus saying: "Mum, stop taking my picture and help me!"

While I write this, I can hear the kids happily playing together. It goes like this:
Charlotte: "Angus, don't hit me. Angy do you want to jump on me? Angus let's climb on the coffee table!"

So really today was all kinds of awesome. It just depends which way you look at it. I hope your day was awesome too.

Recognising how far I've come.

Once again, the last few weeks have been filled with ups and downs. But I have been able to recognise how far I've come.

We really have been very busy. Nearly two weeks ago, Angus turned 2! I can't believe my little baby is growing up. We had a busy few days with Mum and Dad arriving. We had a little morning tea with family on the weekend so there was lots of baking (as well as some cupcakes for his actual birthday which he spent at daycare). It was a lovely weekend. Then on the Monday I had a job interview. I was surprised that I got an interview after applying for the role, since it was a little out of my previous experience. I know everyone finds job interviews stressful, but I don't think that I did quite enough (especially since I haven't heard anything, which I'm assuming means I haven't got the role). 

The fish cake

Angus enjoying some cake

 Tuesday we had a HUGE day. I took the kids off to see the Queensland Symphony Orchestra's kiddies concert. We drove into Southbank and made it to the venue. Charlotte loved it - there was a ballerina, and violins, and tuba's. They do a good show. Angus unfortunately, cried pretty much the whole way through although he did stop to clap. Afterwards we went to the lagoon and had a play in the water, followed by lunch. It was a lovely day. We all had a little lie down when we got home, which is when I realised Charlotte was running a temp. Overnight she got worse (38.9 at one point) so the next morning we had to take her off to the doctor.

With one dose of antibiotics she was already on the mend. So that afternoon on a whim (well not really, it is something we have talked about for ages), we went and adopted a new kitten! Her name is Abby, and she is adorable. Charlotte LOVES her. Possibly a little too much. The poor thing has been put in the dolls cradle, the shopping trolley, the sleeping bag, the dolls house, and carried around like she is a toy.

A very happy Charlotte and Abby the kitten

Also on Wed. I made the decision to lower the dex. I'd been feeling so good, and with the easter long weekend coming up I knew I had a few days with James around to try and wean. Thursday afternoon the withdrawals started to hit me. The fatigue became a lot worse. Friday we had a quiet day (although I did make hot cross buns); Saturday I managed a trip to the shops in the morning but that was it. James took the kids off to Bunnings in the afternoon to give me a break. I was really struggling. Sunday was even worse. I spent half the day in bed with an upset tummy. It wasn't quite how I wanted to spend easter. However by evening I was feeling better.

Monday things were improving and we had yet another big day out to GOMA and the Qld Museum. Today I am feeling a lot better. I am still tired, but I think I am over the worst of the withdrawals. I am a bit dizzier than I would like although I have only had to take the occasional anti-nausea tablet.

Even a few months ago, there is no way that I could have managed half of what the last week held. I was too scared to do something like take the kids out alone in case I couldn't cope. Yet I managed and we had a great day. A few months ago I wouldn't have even thought about applying for a job, let alone go to an actual interview. And even though last weekend was really (really) rough, I bounced back quicker than I have before and I'm hopeful that I'll start feeling energetic again. Even at the gym I have to realise how much I can now do. Last week I leg pressed 110kg. Just under a year ago, I couldn't walk.

I am feeling a little emotional at the moment. The anniversary of my hospitalisation is approaching, and it is playing on my mind. But this milestone just serves to highlight what I've been through, and how far I've come.

Where is your village?

"It takes a village to raise a child" is a much often quoted African proverb. You can imagine how this proverb came to be. The women of a village there for a child's birth, to help the mother through those early days, to look after toddlers while others cooked and cleaned, and to guide each other's children through life.

In our society, we no longer have villages. The rise of suburbia can mean an endless line of houses with shutters drawn, people not knowing who their neighbours are. Families become separated and spread out. Mothers, sisters, aunts, no longer live side-by-side, but many hundreds or thousands of kilometres away. Motherhood is isolating, particularly when your village has been divided.

However today, unlike in any other time, we have the benefit of new villages being created every day, in places you wouldn't think.

For me, my villages exist not just in this suburb, but on-line. Through the joys of the internet I have found many groups where I can get support, share stories, get advice, have a cry and a laugh. I found some internet forums when I was pregnant with Charlotte for Mums all due at the same time. Over 4 years later, this group is still going strong through the wonder of facebook. Yes I know some people don't like it, but for me, it is an outlet, and a way to communicate with the world. I have also found other groups that have helped me navigate this tricky path of motherhood - one for IVF mums, one for brain tumour support, one for young people with cancer, and so on. Each of these groups helps me get through the tough days, as they know exactly what I am going through. 

Of course there are always risks talking to people on the internet. There have been some people come and go who I have questioned their mental state. Some people are just outright mean and nasty. Others a little too eccentric for my liking. Unfortunately some spats do occur; it is sometimes hard in a print media to tell if someone is joking or being sarcastic. I found that I use abbreviations more than I should. I like LOL a lot, even though I never LOL in real life. (I'm more of a sniggerer). And I quite like my winky, smiley face. ;) However I have also met some of these virtual friends, and they are just delightful. But I am proud to say that all of them are my friends. These friends have supported me through the tough times - one group bought me a gorgeous spa voucher when I was first diagnosed as a treat, another sent me flowers when I was in hospital and someone special sent something for the kids. I also would like to think that I am there for my friends too when they need it.

While it may not be traditional, these groups are now part of my village. For which I am eternally grateful.

Where is your village?

Better things to spend your money on

Last week, James and I went to the Home Show. The last time we went there was B.C (before children) and a lot has changed for us. Unfortunately, in that time, we have done very little to the house. I've blogged before about all the grand plans we had, and how we just never had the money.
However we finally feel that we are slowly getting back on top of things. Not only that, but I feel like we are entering a head space where we can actually think about doing things to the house. James and I both feel it is important to keep doing things and improving the house. Otherwise it will literally fall down around our ears.

With that in mind, we had a few things we were interested in looking at. Solar electricity was one of them. Thankfully there were several stalls there so we could see what deals were available. We approached one stall, and loitered a bit before the sales man approached us. What happened next left me quite gobsmacked.

We discussed what our needs were, and what they offered. The salesman was dismissive of us getting a higher kilowatt system. In fact, he was dismissive of us getting solar at all. He turned to me and said "there are probably better things you can spend your money on". We walked away from him quite amused. Perhaps he didn't think we were genuine buyers, however he didn't seem keen to sell to us at all. After thinking about his comment for a while, I actually then got a bit angry. Obviously this man didn't know us, or our story (nor should he really). But I'm not quite sure what he thought was a better thing to spend our money on. I'm sure he wouldn't think that spending $7k on cancer treatment was all that great a deal. Or $20k on conceiving children (especially when most of the population get to do that for free).

Ultimately his comment pushed us to actually sign up for solar (with another company). To us, being able to spend money on something that will improve the house, save us money, and be good for the environment etc is much more exciting thing than spending money on medical bills. And the radiation we bought last year has proved very ineffective at running any appliance. I did try to shoot laser beams out of my eyeballs, but alas it didn't work.

Of course we still have some grand plans for the house but that will involve a trip to the bank before we can do too much.

So with the salesman's comments ringing in my ears, I am reminded of that scene in Pretty Woman where she goes shopping and says "You work on commission right? Big mistake. Huge. I have to go shopping now!"

Feeling hopeful

The last two weeks have been good. Not just good. They have been great. I feel nearly like my old self again. I haven't had to take any anti-nausea tablets for two weeks. I still feel dizzy but it isn't making me feel sick. I am tired, but not in a sick, fatigued type of way. More in a "I have two kids and I'm a Mum and that is tiring" way. I don't want to jinx myself, but I actually feel better than I have ever felt in the past two years.

I'm sure that the dex is playing a part. Which is hard, as I know I should try to get off it again but I really don't want to. My quality of life feels good right now so why change that? I am slowly coming to accept that I can't lose this weight while on it, but really that is a small price to pay for feeling like a normal person.

I'm feeling so good that I have made the big decision to return to work. I have already started to look for positions and will start applying next week. (I also had a kick up the bum to do this because of changes to our registration provisions and I simply don't see how I can stay registered without working).

In other exciting news, James and I have been talking about renovations we can do to the house and might go to the bank and talk about refinancing so that we can do this. We also have bought some solar panels to go on our roof which is very exciting. We finally feel that we are doing good things for the house that will make it a nicer place to live.

I can't begin to express how good it feels to not be obsessing every moment about how I'm feeling. When the nausea is constant, it is hard not to over analyse and become paranoid. But the last few weeks have just been filled with holidays, house things, playing with the kids, and enjoying life. I am hopeful that this lasts and begins the next chapter for us all.

One step forward, two steps back

Once again time is passing too quickly. We have been quite busy here doing lots of things. James went away for business, they started work on fixing our house, and we finally had a holiday.

I also dropped the dex altogether. But don't get too excited. It happened the same week as the anniversary of my radiation. Normally I like to mark milestones like this, but for some reason I just let this one go. I re-read my blog post from a year ago and I found it quite ironic that just like a year ago, I was sick. Yep I got a cold from the kids which turned into a nasty infection. Nevertheless, I tried to persevere with dropping the dex. I had some positive signs from stopping it - my appetite was decreasing, I could feel a lightness in my mood and my self. However, the nausea was getting worse. And the dizziness. I was having days where I was actually vomiting and needed to take 4 doses of my anti-nausea meds (when I have been managing with one).  I found too that I was forgetting words and really struggling with talking. Then my balance went and I started to fall over (walls are handy sometimes!). So I went back on the dex - up to 0.5mg. After a few days I started to feel better again. Then while we were away on holidays I had an allergic reaction to the sunscreen (this has happened a few times lately with other things; my GP doesn't seem to know why but I think it is related somehow) so I went up to 1mg again.

So two months later I am back to where we started. I am a little disappointed with this. Although last week, all week, was a good week. And the last few days feel like good days. Right now, I feel good if not very confused. Yes I need to be off the dex, but if it gives me a good quality of life then surely that outweighs the side effects?? I should drop it again but James has yet another trip coming up so I don't want to change anything until he gets back. I also need to go and get some tests done and arrange my next MRI but I am just a bit over all of that so I keep putting it off.

In the meantime, I am coming to accept that being good one day, and rotten the next, is just part of my life now. So while today is good I will enjoy it. I'd better go and do something productive then like putting washing away, or maybe have another cuppa.

So close

I am on 0.25mg. I am so close to being off the dex. After feeling so sick earlier in the month, I decided to just drop my dose even though I wasn't feeling great. I just want to be done with this drug. Usually it takes a few days after I drop the dose for me to begin feeling better, although some drop downs have been easier than others. I managed quite well going from .75 to 0.5mg. This drop down to 0.25mg has been a bit harder.

It was probably made a bit harder because of all the anxiety surrounding the last few days. The wild weather and flooding we have experienced has been a worry. I kept looking at the holes where our skylights should be and hoping that the tarps would hold. Fortunately, they did and we survived unscathed. However all this extra stress does screw around with my adrenaline levels and so once again I crashed hard. Monday I slept for much of the day and I've been extremely fatigued since.  I've read that it may take up to a year for my body to be able to respond appropriately to stressful events, so I just need to be mindful of how these things affect me.

So I am determined to get off the dex. I will give myself at least another week before stopping it altogether. In just over a week it will be one year since I had my radiation. I would like to be off the dex then but I will see how I feel. This last step is scary. I am anxious that the swelling will return. I am anxious that I will continue to be tired and nauseous. But until I get to that point I just won't know. 

A bit of a bad week

I don't often share all the bad times. I tend to have a bad day at least once every week or so. In the last few months that has improved tremendously, and I might just have a bad morning that an afternoon nap fixes, or just one day that is bad but some really good ones after that. Unfortunately I seem to have had a bad week.  I'm not quite sure what set me off. I have probably overdone it. We had all the excitement of Charlotte's birthday and her birthday party. I felt like I was running on adrenaline for a couple of days. This isn't as good as it sounds as the dex. can play havoc with my normal cortisol/adrenaline levels so feeling a bit overstressed can really muck it up further. I also decided last week to increase my exercise and tried to do some running.

By Thursday I was a wreck. Thankfully it was a daycare day so once they were packed off I slept, then lay on the couch, then slept some more, more couch time - you get the picture. I also decided to drop a dose of the dex which may have been a bit silly. Friday I dragged myself to the gym for a light workout but I was still feeling awful. Nothing obvious, just more fatigued than usual, more nauseous, dizzier. I also had an earache which probably sounds like a small thing. However, just before I was admitted in April, I had an earache from the swelling so I now associate that with tumour swelling.

We managed to do some things on the weekend - shopping, catching up with friends, some swims in the pool (I find being in the pool very therapeutic), but I wasn't feeling any better. On Monday I tried to tackle some housework which had drastically taken a backseat. I bent down and popped a muscle in my thigh. Which was odd, and extremely painful. A few hours later I did it again in my calf which was excruciating. I then spent the next few hours getting myself very anxious about why I was suddenly having muscle spasms/cramps. Dr Google got a workout. My paranoia was in overdrive. Did I have low potassium? Was it low because I had cushings syndrome? Did I have a muscle myopathy? Was it a DVT? And around I went. And yes, I then sat and cried. It is times like this that I realise that I am sick; that other people don't have to worry about these things. It took a phone call to my Mum for a sanity check to calm me down a bit, otherwise I was all keen to go up to the hospital. I more than likely had low potassium or sodium but due to the heat, and not anything sinister. So James cooked up a delicious meal packed with things that contained potassium (sundried tomatoes are remarkably high in potassium and very yummy in a pasta dish too), and I had an early night as I was simply exhausted.

Today I am feeling so much better. This has been the longest time I've felt so unwell for quite some time. I have to keep reminding myself that I am a squillion times better than I was 7 months ago when I was admitted, however it is scary feeling this sick. And it is overwhelming when you are trying to take care of the kids, do housework and so on. I had wanted to take the kids out today, but we had another quiet day at home. Quiet if you don't count making muffins, cleaning out cupboards, playing games, making a rocket ship picture, doing some washing, separating screaming/fighting children, and having a swim. But I do intend to have a quiet one tomorrow. And after a terrible week, I am still on the lower dose of dex too - 0.75mg and on the way down, although I might just wait a bit before trying that again.

A blobby update

I realised that I haven't really given a proper update about how blobby and I are doing for a while. I felt a bit overwhelmed after the last round of specialist appointments in November. Looking back, I probably had a setback from September to November. The trip away in September really took it out of me and I had quite an increase in fatigue. So by the time I saw my neurologist at the beginning of November I was well and truly over it. It didn't help that I was so emotional, but he did bring up the option of surgery at that time. The latest MRI had shown no increase in tumour size, and the oedema had decreased, but the nausea was persistent and quite frankly I had had enough.

The idea of surgery is quite scary for so many reasons. My neurologist seemed quite keen to consider it. He did acknowledge that the dex, and the tumour itself could all be contributing to the nausea, fatigue etc. I left that visit feeling a bit flat and overwhelmed. He did however prescribe a different anti-nausea drug (motilium) and to see how that went.

The following week I saw my oncologist who pretty much ruled out surgery. His take was that it wouldn't fix anything; it could possibly make me worse. So I would still have the symptoms. And in his words - I could even DIE (which he said in an overly dramatic fashion but I'm quite aware it is one of the risks). He reminded me that the recovery process can take a long time, he is talking years, and that given I am not even one year post treatment I need to be more patient, and kinder to myself. He was very keen to see me reduce the dex though. Especially as the bone scan I had showed that I've lost up to 20% of my bone mass (which means I have osteopenia, a precursor to osteoperosis). After that I saw my neurosurgeon - who in a 5 minute appointment declared me "stable", and to come back in 12 months for a review.

In this time though I started taking the motilium and to say it has helped has been an understatement. The nausea has decreased, and on some days I don't have it at all. On a bad day I find I have to take two tablets, but otherwise one has been keeping it at bay. And because I have been feeling so much better, I took the brave step of reducing the dex. I dropped down to 1.5mg reasonably easy so after a few weeks dropped it again to 1mg. I have to admit that was hard. I spent about a week with increased nausea and fatigue, and sadly there is a level of anxiety that goes with it too (I can't shake the feeling that the swelling is returning or worse when I have a bad day).

Yesterday I saw my neurologist for the first appointment of the year. He was very happy with my progress and was happy to not consider surgery for now, although was very keen to have a "plan" just in case. He discussed that the location of the tumour is so close to vital structures that any growth could be quite significant (as we saw with just a little bit of swelling, only a few millimetres was enough to stop me in my tracks). So I gather he wants to keep monitoring my symptoms and any change means surgery has to be considered. I always get a bit emotional after these appointments. When doing the standard tests (walk in a line, touch my nose with my finger etc) he happily exlaimed how far I've come since he first saw me, which always makes me realise how sick I was. I get the impression my neurologist is pretty chuffed that I am still here and functioning well; I think he expected a worse outcome.

So for now I continue as is, and try to focus on dropping the dex again. I have been very fatigued these past few weeks but the busyness of Christmas and then Charlotte's birthday has taken it's toll. Otherwise I don't see my neurologist again until the end of April, and I will see my oncologist sometime in March. Which will be the longest I've gone without seeing a doctor for over a year! I do have to have some blood and urine tests but they are more for investigation than anything. I've always had dodgy blood pressure and my neurologist has raised that blobby may be causing that, so there are a few tests he is doing to check the functioning of my adrenal gland. It will be interesting to see if that is related.

Unfortunately, the safety net has also reset, so paying the full fee for these appointments will hurt. But I am actually hopeful that this year we won't hit it again, since that means nothing really big has happened. Here is hoping for a calm, peaceful year!